Over the past few weeks, the legitimacy of the online disability community has once again become an object of public scrutiny. Prompted in part by the Telegraph’s “How Having a Disability Became Cool,” which attributes the increasing rate of chronic illness in young women in part to lifestyle trends, the conversation has since metastasized across social media, where an ostensibly simple observation has given way to the much more contentious question of whether online communities socially reinforce illness by transforming sickness into a source of identity and belonging that patients may become reluctant to relinquish. As several creators have rather crudely observed, there appears to be an improbable abundance of “white lesbian women using walking canes” populating particular corners of the internet. The existence of this exaggeration is treated as conclusive proof that an entire population has begun manufacturing pathology for attention, but this conclusion doesn’t particularly satisfy me.
For the past few years, I have worked as a patient advocate and spent much of that time immersed in communities of people living with chronic illness. So when I encountered the “sickfluencer” dialogue, my attention was pulled to our obsession with adjudicating the legitimacy of individual disabled people, attempts that have been marked by blatant ableism, and how we have allowed it to obscure the more pressing question of why illness is such a potent vehicle for belonging. The Telegraph gestures toward this question when it proposes the desire to “increase one’s status through suffering” or gain access to “a larger community of supporters,” but its explanation stops rather conveniently at the individual seeking that status. It is a fairly simplistic account of a much more complicated incentive structure, one that assigns responsibility to disabled people without exploring the economic and cultural conditions that determine what suffering entitles someone to in the first place. I am far more interested in what it says about the culture through which that desire arrives. Why is membership in an undoubtedly marginalized group so valuable that individuals would feel compelled to reduce themselves in order to secure it?
Time and time again in my work, I have borne witness to disability being extraordinarily effective at estranging someone from conventional forms of connection. Beyond the physical isolation, illness also produces an insidious estrangement through the polarizing devastation of experiencing something, and being unable to reciprocate it with someone who has encountered the same. Take a negative test result, typically read as relief. To someone struggling with disbelief in the health care system, the result can instead be a negation of their reality. The online space offers a place where a niche symptom can finally find the reciprocation it had been looking for, regardless of geographic limitation.
Eventually, illness begins to siphon someone from ordinary conversation as restrictions occupy increasingly large portions of a life that the people around them cannot enter. From my experience, this is where the online space becomes an especially alluring haven. Where I tend to see the beginnings of echo-chamber-forming behavior is when that shared experience assumes disproportionate weight within someone’s identity. This creates a fascinating tension as disability is one of the few identities around which a community can form while simultaneously being something its members may actively be attempting to mitigate. At the hands of the lack of understanding from anyone who hasn’t explicitly lived through these experiences, an incredibly small group, we end up with individuals whose identities and validation are intimately tied to their membership and proximity to this online space. Paradoxically, the more consolation they seek in one another and fail to find outside, the more isolated they become. I do not think this insularity is harmless, nor do I think every behavior produced within these spaces should be insulated from criticism simply because it emerged from genuine alienation. But treating the echo chamber itself as the origin of the problem reverses the chronology. These communities become capable of exercising such disproportionate influence precisely because their members have so few places outside of them in which their experiences are intelligible. If we are concerned by the degree to which illness can consume someone’s identity, then perhaps our attention should extend to the conditions that made illness one of the only identities through which they could reliably access understanding.
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This effect becomes more consequential when considering another criticism levied against these communities, the increase in overt displays of disability bordering on exaggeration. Much of the criticism centers around patients appearing to lean into the reprieve their disabilities afford them, presenting themselves as capable of increasingly little while attempts at improvement seem omitted from their pages. The Telegraph crystallizes this concern in its insistence that, if a “sickness identity” exists, there must also be a “recovery identity,” framing improvement as an important counterweight to online cultures organized around illness.
While I don’t disagree with the presence of these behaviors, as their existence is unfortunately difficult to contest, I do disagree with our instinct to point the finger at the individuals caught within this cycle. Our relationship with disability is inevitably shaped by the economic conditions under which we encounter it, and by a culture that has demanded absolute productivity while demonizing any deviations from the mandate. Under the conditions of rapidly dwindling social safety net programs and broader economic instability, it becomes easier to understand support afforded to others as coming at the expense of ourselves. This scarcity exists alongside a cultural understanding of productivity as an indication of moral deservingness, where the willingness to work regardless of circumstance is valorized enough that an inability to do so must be sufficiently severe to warrant exemption.
It is precisely this scarcity logic that appears when the Telegraph asks how the family of a severely disabled child should feel watching the definition of disability expand to encompass someone with comparatively mild limitations, or when it imagines specialist waiting lists “clogged” by people whose needs are deemed less legitimate. The underlying premise is that recognition and accommodation are finite enough that one person’s claim necessarily diminishes another’s. But why does disability need to become an issue of scarcity at all?
Those who are even slightly impaired, and unable or unwilling to martyr themselves at the hands of capitalism, might consequently lean further into an image that signals deservingness. As we turn on one another, the mere image of a disabled person receiving accommodation becomes a perceived threat to already limited resources, creating an even more hostile environment outside the solace of patient communities and leaving little space for someone to exist between complete incapacity and conventional productivity. Disabled people are consequently pushed inward toward the communities in which their limitations are understood, while simultaneously being asked to continually prove that they deserve the reprieve the rest of us workhounds do not get. How can we then be surprised that we end up where we are?
That is why indiscriminate skepticism is such an inadequate response to the phenomenon. If alienation helped produce the intensity of identification we are observing, further alienation cannot plausibly resolve it. Nor can patient communities alone be expected to undo the dynamic while continuing to function as the only spaces in which many of their members feel accommodated.
It is not the patient who made severity a prerequisite for recognition, but they are the ones left having something to lose as they gain pieces of their lives back. Recovery cannot become culturally desirable while continued belonging and accommodation remain contingent upon appearing sufficiently sick. The community that offered refuge at their sickest should remain equally available as their circumstances change, without every privilege they possess being used to discredit the limitations that remain.
It is considerably easier to scrutinize the disabled person on our screen than to interrogate the systems that have made their degree of impairment consequential in the first place. But if we are genuinely interested in understanding why these communities have assumed such power, our scrutiny is better directed toward the conditions that made them necessary. The people caught within them may be the most visible manifestation of the problem, but they should not become its most convenient target.
And until we find a way to create belonging that does not become more accessible in proportion to someone’s impairment, we will continue reinforcing the very “sickfluencer” phenomenon we are so eager to condemn.
Sophie Shah is a patient advocate.
